The thing is I don't think it's OI because it's chronic and not just getting up but sitting too. I just feel off balance.
I don't even know if it's worth dropping so much money on an expert to find out if it's CFS, fibro or both because the treatment is the same and barely any at that. It would be nice to know though what the hell is wrong with me.
OI can be chronic. It doesn't just happen when you stand. Lots of us have OI symptoms sitting, and some even lying down. For example, many people with ME have low blood volume, which can cause problems all the time. One rough way to check for low blood volume -- it's not a perfect test, but it might give you a clue -- is to measure your first morning BP. If your pulse pressure (systolic-diastolic) is less than 30, and certainly if it's less than 25, you might have low blood volume.
The treatments for fibro and ME/CFS are definitely not the same. A number of years ago many doctors thought they were the same illness and treated them the same. Now we know they are not and treatment can be very different.
There are plenty of treatments for ME/CFS. None of them are a cure, but they can improve quality of life significantly. You can find out about a lot of them by reading here at PR. There are also some significant treatments for fibro that could help such as Cymbalta, Lyrica, Savella, physical therapy, for example. Exercise can also help with fibro,
as long as you don't have ME/CFS also. Don't give up too soon. Life is too short to waste it being in pain and fatigued unnecessarily.